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How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Margaret Barton-Burke

President, ONS

The dramatic cost shifting to vulnerable populations that is taking place within the Health Insurance Exchanges is troubling. The Oncology Nursing Society (ONS) believes that access to cancer care is the right of all people.

Angela Ostrom

VP, Public Policy & Advocacy, Epilepsy Foundation

People living with chronic conditions like epilepsy often rely on medications to maintain their quality of life, and approximately 2/3 of the nearly 3 million Americans with epilepsy have seizure control largely due to pharmaceutical treatments.

Virginia T. Ladd

President , AARDA

Brian Hujdich

Executive Director, HealthHIV

Bob Blancato

Executive Director, NANASP

As reported in the June 11, 2014 Avalere study examining cost sharing in silver exchange plans, many drugs for patients with chronic conditions enrolled in silver exchange plans are priced as to be unaffordable, creating access barriers for many patients for whom the landmark Affordable Care Act was particularly designed.

Lawrence A. LaMotte

Vice President, Public Policy, Immune Deficiency Foundation

Colon Cancer Alliance

Colon Cancer Alliance, Colon Cancer Alliance

The Colon Cancer Alliance is committed to providing support and empowerment to those who are affected by colon cancer. This is why we’re actively addressing the patient impact of high out-of-pocket costs for medicine.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

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How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

The dramatic cost shifting to vulnerable populations that is taking place within the Health Insurance Exchanges is troubling. The Oncology Nursing Society (ONS) believes that access to cancer care is the right of all people. While the Affordable Care Act (ACA) expanded access to insurance coverage, unaffordable co-insurance payments continue to threaten access to cancer care.

The vast majority of plans in the Health Insurance Exchanges place an unreasonable out-of-pocket cost burden on patients by requiring significant co-insurance for the vital medications used to treat serious health conditions according to new research from Avalere Health. The study demonstrates that in seven of 19 classes of medicines for serious illnesses, such as cancer, more than 20 percent of plans require co-insurance of 40 percent or more for all drugs in that class. In 10 of the 19 selected classes at least 20 percent of plans require co-insurance of 30 percent or greater for drugs in the class. The life-saving classes of oncology drugs affected include metabolic bone disease agents, antineoplastics, and antiemetics.

The study finds that more than 60 percent of plans place all covered medications for certain types of cancer treatments in the plan’s highest formulary tier with the highest level of cost sharing. Instead of paying a co-payment, patients are charged co-insurance. As a result, patients receiving medical treatments like chemotherapy can be hit with huge out-of-pocket costs. These formulary designs are imposing barriers to affordable, necessary care.

ONS finds Health Insurance Exchange decisions place all drugs of a particular class in a high tier formulary level particularly concerning. Insurance coverage is meant to spread risk across an entire pool of patients but these formularies are shifting the cost burden entirely onto the patient population dealing with diseases like cancer. This trend can negatively impact patient health and make access to cancer treatment difficult.

ONS is a professional organization of more than 35,000 registered nurses and other healthcare professionals committed to excellence in oncology nursing and to leading the transformation of cancer care by initiating and actively supporting educational, legislative, and public awareness efforts to improve the care of people with cancer. ONS provides nurses and healthcare professionals with access to the highest quality educational programs, cancer care resources, research opportunities, and networks for peer support. Learn more at www.ons.org.

Margaret Barton-Burke President, ONS

Margaret Barton-Burke President, ONS

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Margaret Barton-Burke, PhD, RN, FAAN, is the president of the Oncology Nursing Society (ONS). She is the Mary Ann Lee Endowed Professor of Oncology Nursing at the College of Nursing, University of Missouri-St. Louis, and a research scientist at Siteman Cancer Center in St. Louis. Dr. Barton-Burke is a Fellow of the American Academy of Nursing (FAAN). She is a founding member of the Massachusetts Pain Initiative, the Massachusetts Cancer Pain Initiative, and several other cancer nursing initiatives. She has received numerous fellowships and most recently was named to the American Association of Colleges of Nursing (AACN) 2014–2015 Leadership for Academic Nursing Program (LANP) Fellowship. Dr. Barton-Burke is the Chairperson of the AACN Research Leadership Network.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

People living with chronic conditions like epilepsy often rely on medications to maintain their quality of life, and approximately 2/3 of the nearly 3 million Americans with epilepsy have seizure control largely due to pharmaceutical treatments. The Affordable Care Act meant hope to those who were priced out of the market for health insurance. This hope can be diminished by hitting consumers with high costs at the pharmacy counter. High out-of-pocket costs may force individuals to choose between medications and other essential family costs. Faced with challenges to living expenses, food budgets, child care, and/or other medical costs individuals and families who face steep out of pocket costs may not get a prescription filled. Or, they may take a medication as they can afford the pills rather than how their physician directed. This is not the decision that we wanted families making at the pharmacy counter when they entered the ACA exchanges. A failure to fill a prescription or adhere to physician directed use of a medication can result in costly health complications. This is especially true for people living with epilepsy, who rely on anti-epilepsy drugs (AEDs) -- the most common and most cost effective treatment for epilepsy, to control and/or reduce seizures.

The Epilepsy Foundation strongly supported health care reform, and those reforms will largely fail or succeed as each patient steps up to the counter at their local pharmacy and expects to come home with the medication their physician recommended.

Patients with epilepsy who do not take their physician prescribed medications are at a high risk for developing breakthrough seizures and related complications. Families and individuals facing economic stress due to the costs of prescription drugs may not fill a prescription, and this can mean increased costs to other payers in health care system -- including increased medical costs or hospitalization related to preventable seizures. The cost to the individual is even higher as uncontrolled seizures can impact family, employment, cause injury, and could even lead to death. Sudden Unexpected Death in Epilepsy (SUDEP) is the most common cause of epilepsy-related deaths and occurs more frequently in people with epilepsy whose seizures are poorly controlled. Uncontrolled seizures also mean lost wages and productivity, not just for the individuals living with epilepsy but also their families and communities.

People living with epilepsy who have had trouble gaining access to health insurance in the past due to pre-existing conditions had hoped to gain meaningful access to medications and quality care through marketplace plans. If they cannot afford the medications their providers think are best for them, we have not delivered on the promise of the Affordable Care Act.

Angela Ostrom VP, Public Policy & Advocacy, Epilepsy Foundation

Angela Ostrom VP, Public Policy & Advocacy, Epilepsy Foundation

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Angela Ostrom is the Vice President of Public Policy & Advocacy for the Epilepsy Foundation.

Ms. Ostrom has spent the last 15 years working in disability and health policy. Prior to joining the Foundation, Ms. Ostrom was Assistant Director of Advocacy for the National Osteoporosis Society and worked for over five years at the National Multiple Sclerosis Society as Senior Director of Public Policy & Advocacy Research.

At the Foundation Angela oversees advocacy efforts on federal and state public policy and heads the legal advocacy efforts of the Foundation’s Legal Defense Fund. She serves as Co- Chair of the National Health Council FDA Issue Team and as a Steering Committee Member for the Partnership to Improve Patient Care.

Angela earned her Bachelor of Arts degree from The Ohio State University in 1996 and her law degree from the University of Maryland School of Law in 1999. Upon graduation, Ms. Ostrom was selected as a Presidential Management Fellow. Through this federal program she worked for the Social Security Administration Office of Public Policy, Office of the General Counsel and Office of Disability Policy. Angela completed her fellowship program in the office of United States Representative Stephanie Tubbs Jones (Ohio). She is a member of the Maryland Bar.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Carl Schmid Deputy Executive Director, The AIDS Institute

Carl Schmid Deputy Executive Director, The AIDS Institute

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Carl Schmid was named Deputy Executive Director of The AIDS Institute, a national public policy, advocacy and research organization, in June, 2009. Prior to that he served as the Institute’s Director of Federal Affairs, a position he held since February 2004. Prior to joining The AIDS Institute, he served as a consultant to a number of HIV/AIDS and civil rights organizations. He has worked in Washington for over 20 years, and began his public policy work in the energy arena, which continued through 2003.

Mr. Schmid is co-chair of the AIDS Budget and Appropriations Coalition; a Convening Group member of the Federal AIDS Policy Partnership, and co-chair of an HIV Testing Reimbursement Work Group. He is a former chair of the HIV Prevention Action Coalition and the Ryan White Reauthorization Work Group. He remains active in those coalitions along with others that advocate for Medicaid, Medicare, and Healthcare Reform; the AIDS Drug Assistance Program (ADAP), and Hepatitis issues.

He was a member of the Presidential Advisory Council on HIV/AIDS from 2007 to 2009, and Chaired its Domestic Subcommittee. In 2010 he was named by POZ Magazine as one of the 100 most effective AIDS fighters in the nation and was recently named by Whitman Walker Health as one of the 25 individuals who have played prominent roles in the fight against HIV/AIDS in DC over the past 25 years.

Mr. Schmid earned a B.A. in Public Affairs and a M.B.A. in International Affairs from the George Washington University in Washington, D.C.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Virginia T. Ladd President , AARDA

Virginia T. Ladd President , AARDA

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Virginia T. Ladd, R.T. – Virginia Ladd is the President and Executive Director of the American Autoimmune Related Diseases Association, Inc. (AARDA), an organization that she founded to bring a national focus to autoimmunity and increase collaboration in autoimmune research, education, awareness, and advocacy. She has been involved in the nonprofit community for over 30 years as a patient advocate and educator. Mrs. Ladd served as president and executive director of the Lupus Foundation of America.

Mrs. Ladd was instrumental in the formation of the International Alliance of Patients’ Organizations (IAPO), an alliance dedicated to advocacy for patient centered health care, and is an immediate past member of its board of governors. She has served as a member of the board of directors for the UN NGO Health Committee and is a past member of the board of directors of the National Health Council. She is the founder and facilitator for the National Coalition of Autoimmune Patient Groups (NCAPG), an organization of 33 national autoimmune disease-specific groups.

She was the first non-researcher to be awarded the “AESKU.AWARD for Life Contribution to Autoimmunity,” which was presented to her at the 7th International Congress on Autoimmunity,” in Ljubljana, Slovenia. She is also the recipient of the prestigious Heritage Award of the Johns Hopkins University Alumni Association.

She has spoken literally all over the world at workshops, meetings and international conferences and spoke on “Women and Autoimmune Diseases: Gender and Biological Peespective" as part of the UN Commission on the Status of Women 2000.

Mrs. Ladd serves on several committees of the National Institutes of Health, including the Autoimmune Diseases Coordinating Committee; the Public Interest Committee for the National Institute of Heart, Lung and Blood; the Public Interest Group for the National Institute of Environmental Health Sciences; and the Panel of Experts for the NIH Autoimmune Diseases Research Plan.

She has written, co-authored and/or published scores of scholarly and consumer articles, reports and papers on autoimmunity.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Brian Hujdich Executive Director, HealthHIV

Brian Hujdich Executive Director, HealthHIV

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Brian Hujdich serves as Executive Director of HealthHIV, one of the largest national HIV non-profit organizations, and provides leadership to HealthHIV's staff and Board of Directors, focused on programmatic achievement, fiscal stability, and organizational development. Mr. Hujdich has over twenty-nine years of experience -- primarily in HIV -- in healthcare association management, medical advertising, health care public relations, public policy, and medical education.

At HealthHIV, Brian overseas a diverse portfolio of programs and initiatives, which come together to advance community health and support the integration of HIV into primary care, including the:

Prior to leading HealthHIV, Mr. Hujdich served as Deputy Executive Director of the American Academy of HIV Medicine and, before that, Vice President, Account Director, of Medicus (Publicis) where he supervised consumer and professional advertising and medical education for numerous HIV treatments and diagnostics, including: Efavirenz, Atazanavir, and Trugene. Mr. Hujdich also worked in the healthcare practice at several major public relations firms (Ketchum, Hill & Knowlton and Burson-Marsteller) where he managed numerous HIV product introductions (including: Didanosine, Stavudine, and Nevirapine) and worked with a variety of HIV/AIDS service organizations, AIDS community-based organizations, and non-profit agencies.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

As reported in the June 11, 2014 Avalere study examining cost sharing in silver exchange plans, many drugs for patients with chronic conditions enrolled in silver exchange plans are priced as to be unaffordable, creating access barriers for many patients for whom the landmark Affordable Care Act was particularly designed. This study exposes a genuine flaw in a key part of the Act which especially impacts the 25 percent of enrollees in exchanges who are between the ages of 55 and 64. People as they age find their prescription drug costs rise, in part due to increases in chronic conditions. These pre-Medicare individuals may find that signing up for silver exchange plans represented a false economy. While it is true that they may pay less for monthly premiums than gold or platinum exchange plans, they may pay at least several times more in co-pays for prescription drugs, especially for drugs treating chronic conditions. This situation needs to be remedied by plans since 95 percent of those on silver exchange plans are paying for their plans with financial assistance, making them unlikely to have the means to afford high out-of-pocket costs for medications. The Affordable Care Act has actually helped to lower drug costs for seniors enrolled in Medicare Part D. That same law should not allow penalties for those nearing but not yet at the age of Medicare eligibility with high prices on drugs they need.

Bob Blancato Executive Director, NANASP

Bob Blancato Executive Director, NANASP

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Bob Blancato is the Executive Director of the National Association of Nutrition and Aging Services Programs. He is also President of Matz, Blancato and Associates. He is the National Coordinator of the 3000-member Elder Justice Coalition. Bob has more than 20 years of federal government service, including 13 years on the senior staff of the House Select Committee on Aging and a presidential appointment to be the Executive Director of the 1995 White House Conference on Aging. Bob is currently on the Boards of the American Society on Aging and the National Council on Aging. In December 2012, Bob was reappointed to the Commonwealth Council on Aging. In January 2013, Bob was selected to be the Volunteer State President of AARP in Virginia. He holds a Masters in Public Administration from American University and a Bachelor of Arts from Georgetown University.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

Larry joined the Immune Deficiency Foundation (IDF) in 2009 after a successful career in business and as an elected official in the General Assembly of the State of Maryland.

Larry’s interest in health policy issues crystallized while serving 12 years as an elected official. In that capacity, Larry served on the Environmental Matters Committee as Chairman of the Subcommittee on Health and Environment. Virtually all health and environmental legislation came before his subcommittee.

After voluntarily leaving the legislature, Larry was named Vice President of Business Development and Marketing of Trigen Baltimore Energy Company. At Trigen, he successfully developed several multi-million dollar co-generation energy projects.

In 2003, Larry formed Energy Options, LLC, a consulting firm which assisted medium and large businesses by devising purchasing strategies of electricity and natural gas that mitigate financial market risk in the deregulated marketplace. In late 2008, Larry merged Energy Options with a larger energy consulting firm.

Larry continued to be active in the Baltimore community having served on the boards of a hospital, a non-profit health services provider and now a committee of the Maryland Hospital Association.

At IDF, Larry is responsible for all public policy matters including federal and state legislation, a regulatory issues as well as health insurance policies which create patient access obstacles to care.

How are patients with chronic conditions who have exchange coverage affected by high out-of-pocket costs for medicines?

The Colon Cancer Alliance is committed to providing support and empowerment to those who are affected by colon cancer. This is why we’re actively addressing the patient impact of high out-of-pocket costs for medicine. Due to increased costs, patients are making decisions about treatment based on financial implication as opposed to selecting the best treatment path to address their current condition. The Affordable Care Act and Health Insurance Exchanges were intended to address the need for affordable care. The new Avelere study supports the patient stories we often hear. High copays and deductibles can create a financial toxicity which burdens a patient at a time when they need to be focused most on their care. With colon cancer, timely treatment can be of the utmost importance, especially for patients whose cancer is aggressive. When out-of-pocket costs become exorbitant, patients suddenly have to weigh the cost of paying for the drug they need versus quality and quantity of life. These decisions not only impact the individual – it can have a ripple effect throughout a family who are working to collectively make ends meet. As one member of our community puts it:

“My test results came back. The news wasn’t good. Now, I’m left trying to figure out where to go from here. Is it worth paying for something that may buy me a few extra months – at most – and leaving a mountain of debt that will take my family years to repay? And although I can no longer work, as a father, I still feel like it’s my job to provide and take care of my family. That means thinking about what will happen when I’m gone - and at this point, leaving them with a mountain of debt seems increasingly irresponsible.”

This is especially true for patients with metastatic disease, whose chemotherapy copays can cost hundreds – sometimes even thousands – of dollars per treatment.

In some cases, inhibiting costs take important treatment decisions out of the hands of the patient altogether and place them at the mercy of a third party who may be able to pay for the drug. For example, another patient in our community was recommended for a treatment regimen of Xeolda, Erbitux and Avastin by his treating oncologist.

In this patient’s words:

“On Thursday, the pharmacy called regarding the Xeloda and told me the co-payment was $1,212. I told them I couldn't afford that, so they said they’d look for a foundation to pay for it. An hour later, I got a second call to let me know that they’d gotten the cost approved up to a certain amount. I figure it’s enough to get me through the first three months of treatment, maybe.

“The next day my oncologist calls me. The Erbitux and Avastin are too expensive, but he’ll ask around to see about what can be done. Regardless of the hold up, he told me to start taking the Xeloda. I'm left wondering: will I have to spend the rest of my days chasing down foundations or other organizations trying to get my medications? And what happens when we can’t find someone to fund them?”

It’s no secret, cancer care can be expensive. But, are we now to the point where we’re telling patients that if they can’t afford treatment, they must go without? New drugs are coming on the market that gives the cancer patient hope. Hope that they can see their kids or grandkids grow older, hope that they can improve their quality of life, hope that cancer won’t define their final days. With the high out-of-pocket costs, these treatment options may simply not be an option for those without the financial means to pay. Do we really want a society where the rich can survive for years but the middle class and poor cannot?

Colon Cancer Alliance Colon Cancer Alliance, Colon Cancer Alliance

Colon Cancer Alliance Colon Cancer Alliance, Colon Cancer Alliance

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The Colon Cancer Alliance, Inc. is a not-for-profit 501(c)3 corporation (EIN 86-0947831). We are the leading national patient advocacy organization dedicated to increasing screening rates and survivorship. Ask the hundreds of thousands of people we help each year and they will tell you we are an active, caring community. We know first-hand how devastating this cancer can be. We also know it doesn’t have to be this way.